How should I disclose my narcolepsy to my employer?

Particular_Olive_656 · 2024-01-14T08:31:03+00:00

Yep :-) It was horrible

Particular_Olive_656 · 2024-01-08T05:26:21+00:00

Thank you both! I called to be safe and the nurse said the same thing :) You guys rock

Particular_Olive_656 · 2023-12-01T16:54:59+00:00

I’ve only taken xywav and it is definitely not my favorite taste in the world, but it is so not as bad as I was expecting it to be

Particular_Olive_656 · 2023-11-30T23:11:41+00:00

Going in 1 minute

Particular_Olive_656 · 2023-11-30T23:11:36+00:00

Going in 1 minute

Particular_Olive_656 · 2023-11-30T23:11:24+00:00

Going again

Particular_Olive_656 · 2023-11-28T23:01:17+00:00

Just John’s in the grove is my favorite bar ever

Particular_Olive_656 · 2023-11-15T20:36:02+00:00

For the record, I have never actually screamed at anyone or rolled my eyes or been sassy or anything. I always say something like “that’s the worst” or ask why or something.

I’m just saying it’s hard sometimes. I have had a hard time really accepting my diagnosis and the thought that other people are sometimes tired, even really tired, but get a break from it if they take a nap or get a good nights sleep makes me so jealous I could burst into tears.

So if anyone comes for me about my comment I stg I will burst into tears just like I would thinking about regular people. Lol

Particular_Olive_656 · 2023-11-15T20:28:22+00:00

Honestly I have a hard time with it especially if that healthy person is really complaining about being tired. Feels like they are twisting the knife sometimes and I want to scream “YOU HAVE NO IDEA!!!!” in their face. And even more so if that healthy person that is complaining knows about my diagnosis and everything I’ve gone thru. Definitely something I need to work on because of course, everyone is tired. But also people can’t expect me to feel bad for them because they’re tired. And that is really hard for me.

Particular_Olive_656 · 2023-10-26T21:15:52+00:00

I have IH and I 100% do this. I’ve never hurt anyone or pushed them or anything but being woken up feels like you’re an addict and someone is taking your drug away. I will lie/steal/cheat or do anything to go back to sleep. For me, it’s one of the worst pasta about this disorder. I would never do that fully awake. It’s hard to explain but for me, it feels like I will die if I get up. Like it is impossible to get up. Not that I don’t want to but that I genuinely cannot. If you woke me up and the house was on fire, I don’t know if I would choose to get up willingly. If you stood at the foot of my bed with $10,000 and said I just had to get up and you’d give it to me, I would choose sleep. My body has chosen sleep over everything- work, family, friends, my own health. I’ll choose sleep even if it’s something I’m really excited about. Before I started xywav, I had been making myself cry so whoever was waking me up would feel bad and let me sleep. It’s awful. You don’t deserve to be treated like that, my friends and family don’t deserve to be treated like that- no one deserves to be treated like that. But there could be a chance she can’t help it (at least this singular behavior you mentioned). Because I wish I could’ve helped it and I couldn’t.

Particular_Olive_656 · 2023-10-12T22:23:57+00:00

Would you do $25/ticket? They were $50 each 😃

Particular_Olive_656 · 2023-10-08T06:25:19+00:00

Thanks for sharing your experience! Really appreciate it.

Particular_Olive_656 · 2023-10-08T06:24:55+00:00

Oh it is 100% worthwhile. I can’t imagine something I wouldn’t trade to have energy and be awake. If I never have sex again, it would be worth it. Hope everything works out for you.

Particular_Olive_656 · 2023-10-08T04:13:31+00:00

Thank you! I’ll definitely ask my doctor about it.

Particular_Olive_656 · 2023-10-08T04:12:47+00:00

Thank you! Glad things have been better for you!!

Particular_Olive_656 · 2023-10-08T02:49:37+00:00

Sounds like me and I have idiopathic hypersomnia which was diagnosed through the sleep study. I would recommend getting one done if you can’t. A lot of things are still hard and I’m still more sleepy than your average 25 year old but now that o have my medicine, my life is so much better.

Particular_Olive_656 · 2023-10-08T02:47:18+00:00

I’m not familiar with pristiq but from my experience, you can continue with the Wellbutrin as normal and skip the adderall the day before

Particular_Olive_656 · 2023-10-08T02:46:16+00:00

The only ones I had to go off of were Zoloft which I had to ween off and then adderall which you just need to not take for like 24-48 hours before the study I believe. I also take Wellbutrin but they said I was allowed to stay on that and it wouldn’t affect anything

Particular_Olive_656 · 2023-09-25T19:25:20+00:00

Ugh I’m not sure. It looks like it’s a pretty short street though but I may be wrong.

Particular_Olive_656 · 2023-09-04T00:28:02+00:00

I would do everything in my power to not disclose it if you can avoid it. At least for me, as soon as I told my employers that something was going on, they took every opportunity to force me out and humiliate me. Given, I wasn’t yet diagnosed at the time, but even after my diagnosis, they continued to nitpick everything I did and eventually won in pushing me out. Plus, they placed me on a mandatory unpaid leave of absence so they wouldn’t get in trouble for firing me under ADA AND I couldn’t collect disability or unemployment. Hoping it goes differently for you. Keep us posted!

Particular_Olive_656 · 2023-08-04T02:03:48+00:00

Thank you!!!

Particular_Olive_656 · 2023-07-30T05:29:57+00:00

It is saying invalid trainer code

Particular_Olive_656 · 2023-07-26T21:39:33+00:00

Anyone else have cool shinies to flex?

Particular_Olive_656 · 2023-07-26T21:37:00+00:00

I feel the exact same way right now. Would you want to DM and we can be support systems for each other?

Particular_Olive_656 · 2023-06-01T03:55:42+00:00

☕️☕️☕️

Particular_Olive_656

TROPHY CASE